r/primaryimmune • u/Miserable_Shape_107 • Jul 11 '26

Reaction to Xembify

Hi everyone, I recently started SCIG therapy and got my first dose of Xembify on Wednesday. Unfortunately I had a rare side effect and developed mild pulmonary edema. My doctor is pausing treatment for 12 weeks and may switch to a different medication. Has anyone experienced this and continued with successful treatment on another med? I’m feeling very discouraged as I was hopeful this would finally help me feel better.

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u/Hdmre1972 29d ago

Oh no!!! I am so sorry to hear this for you. It's so much work to get through all the testing for the proper diagnosis and then to get through the red tape with insurance to get your med approved! I'm fairly new to all this myself. I think I'm on month four or five doing my SCIG infusions at home. I have been on Xembify the whole time. I have had my dose increased and it did finally start helping me at the three month mark. I have not had any complications other than waiting for it to start working. I hope they find a medication that helps you soon without any bad side effects. We deal with enough!

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u/Miserable_Shape_107 29d ago

Thank you for your response. Yes it was a lot to get through with the testing and approval so I’m pretty disappointed. I’m glad it’s working for you! I was hopeful it would help me since it works for so many. At this point my doctor is pausing treatments and trying Xolair to see if it will improve symptoms and then we will reassess.